Expert event - siblings week: From Monday 6 April to... - Mencap

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Expert event - siblings week

Sarah_Mencap profile image
Sarah_MencapAdministrator

From Monday 6 April to Thursday 9 April we focused on the wonderful world of siblings.

During this week Clare Kassa (CEO of the Sibs charity - sibs.org.uk/ ) joined us as an expert.

This topic is now closed, but please do read Clare's amazing posts for advice and information for anything to do with siblings.

Clare is an adult sibling – she has an older brother with a learning disability. Clare is passionate about sibling support and wants to ensure that the important role siblings play in the lives of disabled people is acknowledged by service providers and policy makers.

Best wishes

Sarah

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27 Replies
clkSibs profile image
clkSibsExpert

Hello everyone! I am very much looking forward to joining you for parts of next week to talk about everything sibling related! As Sarah has said I am an adult sibling with an older brother with a learning disability. I have also worked in the voluntary sector for most of my adult life and have worked for National Autistic Society, Contact, Family Fund and the Tuberous Sclerosis Association to name a few. I have worked with many young siblings, adult siblings and their families over the years and know that siblings face unique experiences and challenges. Siblings quite often tell us they struggle to get their voices heard, sometimes find it difficult to balance all of their responsibilities and need support to play the role they want to in their brother or sister's life.

So if you want to ask a question about what support we offer here at Sibs, how you can connect with other siblings, how as a parent you can support your sibling child, or if you want to share your feelings as a sibling, I would love to hear from you.

Best wishes,

Clare

jow2319 profile image
jow2319 in reply to clkSibs

Hi Clare. This is a great idea. I am very bored of thinking about covid19 so this is a great distraction.

My brother has a LD. I love being his sister. I have lovely memories of our childhood together, My parents (who are very elderly now) were great. We just all did everything together. We lived near a lot of fields and a lake and we had pretty free rein. The deal was that we had to stick together. I remember lots of walks, buckets of frog spawn, sledging and lots of laughing.

I still like the time best when it is just the 2 of us. Our favourite activity is going to the cinema together. He's heart broken that he can't go at the moment. The loss of routine is a bit of an issue. I can't see him at the moment as we don't live together. I know you can skype but it just isn't the same. Any ideas on how to make this easier?

In the longer term, I am worried about my parents. I also worry about having to take over as the main carer. This scares me a bit. I have my old family and I don't think I will be able to do it. I am sure lots of other sisters and brothers feel this way.

I'm looking forward to hearing from others about how they feel.

Thank you

clkSibs profile image
clkSibsExpert in reply to jow2319

Hi Jow2319 - thanks for getting us started on the sibling thread. It is great to hear about your experiences with your brother when you were children - it sounds like you had an awful lot of fun! What a wonderful shared history the two of you have.

I think the loss of routine is something affecting a lot of people with learning disabilities right now and we are all trying to find new ways of connecting. and keeping in touch. For some of our brothers and sisters this can be a really big challenge. If you can make use of technology then great - Skype, Facetime, Zoom and House party might all be good ways of keeping in touch. And if conversations using these apps are difficult, why not try playing music, dancing together, singing together on line - these tools can make us all feel better and keep the connections going.

We all like receiving letters and postcards - how about sending your brother a note, a photo, a bar of his favourite chocolate, a little care package perhaps, just to let him know you are thinking about him? If your brother has the concept of future, then maybe make a plan together for the best cinema outing you can do together when all of this over? Some of the photo book websites are having some deals on right now - I spent the weekend putting together for my brother a photo book of all of my favourite photos of us as children and some of recent visits - so that he can look through them with his support staff. Or maybe you can make a scrapbook at home to send to him? It would be lovely to hear ideas from other siblings too about what creative ways they are using to keep in touch.

You also mentioned your worry about the future and potentially having to be a full time carer. This is probably one of the main queries Sibs receives from adult siblings. And it is a difficult area. What I would say is it is important to start having conversations with your parents as early as possible. Lots of families assume that one person will take on the care without ever having a proper conversation about what this might mean in reality. If you don't think this path is for you, it is important that you have an opportunity to say this. You mention too that you have a family of your own, remember that if you have children, your first priority is their care. We have a couple of useful guides on our website you might find helpful. "Thinking about the Future" and "Talking to your parents about common sibling issues" can be found at the link here sibs.org.uk/support-for-adu...

Do get in touch with us directly if you need any further support. Good luck!

Clare

DSSmith profile image
DSSmith in reply to clkSibs

Hi Clare,

I'm looking forward to the discussion next week.

I visited your website and looked at the page Adult Siblings Support Group, unfortunately there isn't one listed in my area.

But I'm wondering if there is a Zoom group where people can join in and chat.

During this lock down, I have found a "Cuppa with Carer's" Zoom group that I enjoy attending with a cuppa every day at 4pm.

It would be nice to meet and chat with other adult siblings this way, maybe in the evenings?

Thanks

Darren

clkSibs profile image
clkSibsExpert in reply to DSSmith

Hi Darren lovely to hear from you and sorry to hear there isn't an adult sibling group running in your area currently. If you might be interested in facilitating a group then please do get in touch, info@sibs.org.uk

The zoom group you mention sounds a wonderful way of carers receiving daily support. As yet we do not have online group - we are a tiny charity so our capacity is a bit limited, but it is something we will go away and discuss. In the meantime, you might like to know there is a Facebook group called #Siblife - this isn't run by Sibs but independently set up by a group of adult siblings - do check it out if you would like to connect online.

Do join our mailing list - we produce a monthly newsletter of all the latest sibling news and is a good way of keeping in touch with any new developments. sibs.org.uk/subscribe/

Kind regards

Clare

DSSmith profile image
DSSmith in reply to clkSibs

Thanks Clare,

I've joined the Facebook group and I've signed up to the newsletter.

I attend an online zoom group for carers every day at 4pm.

It's at

mobiliseonline.co.uk/cuppa

and I find it very refreshing.

The people who attend have varied caring roles.

Darren

clkSibs profile image
clkSibsExpert in reply to DSSmith

Thanks Darren, great to know you have signed up to our mailing, do keep in touch. Thanks too for the link to the carers chat - we will share that with other sibling carers.

Do take care

Clare

Sarah_Mencap profile image
Sarah_MencapAdministrator in reply to clkSibs

Hi Clare

There is a great post here too - healthunlocked.com/mencap/p...

Thanks

Sarah

Heuchera profile image
Heuchera in reply to clkSibs

Hi Clare. Thank you for all you are doing to support us siblings. I think one of the hardest parts of managing the covid19 crisis has been the big disagreements I've had with my mum over my sister's care. I think she should be protected from getting the virus as much as possible but my mum thinks it's OK for her to go out and work as long as she is social distancing (my sister says she is but I don't think she would let anyone know if she wasn't). I've had lots of support over managing these kinds of arguments with my mum and I even set up a sib peer support group because I find the family dynamics really hard but sadly I have ill health at the moment and haven't been able to keep the group going. I find it so stressful.

clkSibs profile image
clkSibsExpert in reply to Heuchera

Hi Heuchera thanks so much for posting. Even outside of the current situation we are in, one of the key topics adult siblings come to us for help with is around talking to parents. There are often differences of opinion within families about what the best way to deal with a situation will be and sometimes it is hard for siblings to get their voice heard or views taken seriously. This must be very frustrating for you.

It sounds like you and your Mum both want the very best for your sister, trying to keep some sense of normality for her, whilst keeping her safe in worrying times. I am sure you have had a lot of experience in trying to negotiate similar situations with your family but the current lockdown probably limits communication avenues especially if you don't live together. Raising concerns can be so hard and is especially difficult when tensions are high, which they are for lots of people right now.

It might be worth thinking about different communication methods - is it easier to write down your concerns and share these with your Mum perhaps? Is there someone else in your family who can raise concerns on your behalf so that you are not revisiting old battle grounds personally? Are there ways that you could as a family minimise the risks for your sister if she does continue to work? How is your sister's employer supporting her?

You question whether your sister really understands about social distancing - I wonder if you might be able to provide her with some information that will help her protect herself whilst she is at work if that is something she is choosing to continue to do? Mencap have produced some fabulous resources - do check out this one on social distancing. mencap.org.uk/sites/default...

There aren't easy answers to these situations, but I would encourage you to get in touch if you would like to talk things through. I am pleased to hear that you have some good support and it is important that you take good care of yourself, particularly as you say your own health is challenged. You might be interested to read our article on self care for adult siblings and the coronavirus written by Sibs' Trustee Allie Stewart. sibs.org.uk/support-for-adu...

We know that siblings often find it hard to put their own needs first and take care of themselves. Try to find a few minutes of each day to do something enjoyable for you, reading a book, having a bath, meditating or phoning a friend for support. Perhaps try out our guided relaxation for adult siblings. sibs.org.uk/support-for-adu...

Please take care and let us know if we can support you further.

Kind regards

Clare

Heuchera profile image
Heuchera in reply to clkSibs

Thank you Clare. There's a few new ideas here that I'll have a think about. I really appreciate your ideas and support. Really helpful xxx

clkSibs profile image
clkSibsExpert in reply to Heuchera

No problem at all and do remember we are here if ever you need us. Thanks too for setting up an adult sibling group - you will have made a massive difference to other adult siblings who were a part of this.

Just in case the wider community is interested, I am listing the link here to SibsNetworkUK the network of groups Sibs supports. Due to Covid-19 the groups can't currently meet face to face but you can still sign up to be in touch when the situation changes. sibs.org.uk/support-for-adu...

Best wishes,

Clare

Hi. I like the idea of focusing on brothers and sisters.

We have a new(ish) baby (who doesn’t seem to have an LD) and my son (5) is lovely with her. It is all pretty new but we are managing for now -covid19 isn’t helping as we can’t get out much or show her off. My initial concerns about getting enough sleep have not been a big issue so far. I am looking forward to doing more things as a family and creating some lovely memories.

Practically I do give a lot of thought about how to spend enough time with our new daughter. My son, even at this stage, require a lot of attention. She is a great baby, so we are managing this. But she will get bigger. I do wonder what our house will be like when she is a toddler. Everyone I have mentioned this to says not to worry, but any advice you have would be most welcome.

Thanks

. Adam

clkSibs profile image
clkSibsExpert in reply to Adam1975

Hi Adam

Thank you for getting in touch - it's great that you are already thinking about how you can meet the needs of both children, which will continue to be very different as they both get older. I'm also really pleased to hear that you are managing to get enough sleep - we know from parents of siblings how lack of sleep can have a huge impact on how they feel that they cope during the day, so it's really positive that you still have lots of energy to enjoy your family!

Different families manage in different ways to spend time with each of their children. Whilst your daughter is still so young, you will be meeting her needs through the care that you necessarily provide for her as a baby. As she gets older, however, it's really helpful to carve out time which is hers and hers alone during which she gets your undivided attention. This will obviously depend on what your routines are as a family but the important message is that it doesn't need to be large amounts of time - just regular and focused. This could be bath time, story time at bedtime, chatting time in the car on the way to nursery, during the weekly shop - siblings tell us that it doesn't really matter to them what the activity is, just that they get their parents' undivided attention during it and the opportunity to know that they matter too.

It's important to remember that the attention doesn't have to come from you alone - siblings really benefit from having positive relationships with other trusted adults , aunts, uncles or family friends. Again, just special time which is only for them is what they appreciate and doesn't need to involve expensive trips or days out.

Finally, you can reassure your sibling child that they are just as important as their disabled brother or sister by small gestures - a little note in a packed lunch, or on their pillow when they go to bed, time spent listening to what they say when at mealtimes together or giving lots of praise when they achieve something at school. You will find your own ways to give your sibling child attention as she gets older.

You can also find lots more helpful information on our parents section of the Sibs website here sibs.org.uk/supporting-youn...

Do keep in touch and let us know how you get on,

Clare

Sarah_Mencap profile image
Sarah_MencapAdministrator

Good morning.

I just spotted this on Twitter - twitter.com/MrsNickyClark/s...

It is a podcast where Jo Whiley talks about her sister, who has a learning disability, and her parents are coping with the coronavirus lockdown.

"My sister Frances has learning disabilities & has moved back home for the time being because she became aware that everyone else was ‘staying at home’. My parents are incredible but it’s a worrying time for anyone who is a carer."

Enjoy

clkSibs profile image
clkSibsExpert in reply to Sarah_Mencap

Hi Sarah - yes this podcast is a really honest account from Jo about some of the issues her family are facing at the moment with Frances' care.

Just to also say that we have put some resources together for adult siblings on the coronavirus here. sibs.org.uk/support-for-adu...

Clare

Hi,

We are finding it quite hard with our family dynamic. We have three children two girls and our son who is in the middle has a learning disability. They are aged 5,7,9. The girls get on great after the second week of isolation. Apparently they are best friends now. Haha.

But we feel our son is constantly left out, the girls are told to include their brother and they tolerate him for 10 mins into a game. He then usually walks away or gets a bit angry. I don’t want him growing up feeling like he is excluded. We play games with him 1-1 but I’d love if his sisters would have patience and understand what he is going through. I’ve tried to talk to my oldest but I’m not sure it’s going in. Any advice?

Vicky

clkSibs profile image
clkSibsExpert in reply to Tour_988

Good morning Vicky

Thanks so much for your post. It sounds as though you have a very busy household and it’s good to hear that your two daughters are managing to find something positive within lockdown! However, we know from parents of siblings how difficult they find it when they feel that their child with a disability, illness or long term health condition is left out, or dismissed by their siblings. Even though parents understand that siblings have the right to choose how they relate to their brothers and sisters, they also want to do what they can to ensure that these relationships are healthy and supportive.

It’s really important to remember that your daughters are only 7 and 9 years old. This is a very young age to fully understand the implications of having a disabled brother or to have real understanding or empathy about his condition. It is much more likely that they will view him just as a brother who annoys them sometimes. This is a perfectly normal sibling reaction and you should feel reassured by this.

You say that your daughters do include him in their games but he then chooses to walk away or becomes angry. Have you asked him why he does this? It might be because he doesn’t like the game, because girls play differently to boys sometimes or because he is just bored. You say that you don’t want him to feel excluded - is this something that he has expressed to you or is it your interpretation of the situation? It is natural that you feel very protective about your son and don’t want him to feel hurt but it is equally important to establish whether he does feel this or if it s how you are imagining he feels.

The most important thing you can do to encourage your daughters to have patience and understanding with your son is to model that behaviour yourself. They will take their lead from you, at an age appropriate level and this is to be encouraged. Offering huge amounts of praise when they do include him in their games will have a much greater impact than any criticism, however well meant. Siblings tell us that they find it hard when they are ‘expected’ to include their disabled sibling in all their games when sometimes they just don’t feel like it. This is the message which your daughters need to hear. It is not OK to be cruel, to isolate or gang up against their brother and this sort of behaviour should obviously be talked about as it would be in any family. However, it is OK to choose how and when they want to play with their brother and they should know that they will not be judged for their decisions.

Finally, I would encourage you to use lockdown as a really positive time when you can spend time with your son. If your daughters see you actively enjoying his company and finding things to do which he enjoys, they will normally be drawn towards what’s going on and ask to join in, which is a much more natural reaction than being told that they ‘must’ play with him.

I do hope that you find some of these ideas useful and that you continue to enjoy and value the one to one time with your son, and that your daughters continue to enjoy their time so positively. Do check out the parent section of our website if you would like some further ideas sibs.org.uk

Best wishes

Clare

Hidden profile image
Hidden

Hi Clare. I an the adult sibling of a 49 year old with Apert Syndrome which can include a learning disability & does for my sister. However, there is no formal diagnosis of her learning disability even though it can cause problems (mostly with her relationships with others & with financial issues). She lives independently (2 hour drive away) but currently receives physical care twice a day as she has osteoarthritis. I am concerned that she is unable to access support as she does not have a formal diagnosis of a learning disability & all support is based on her physical needs. The support I would like to see would be with socialising, enriching her life & support with admin / finances - especially if I got ill or unable to help. When I approached the adult learning disability team in her area, I got the impression they were not interested in assessing her as she lives independently so they didn’t feel there was a need - but there have been financial problems in the past that would have escalated very quickly if I hadn’t found out and intervened. Plus she is lonely, bored and isolated and I feel she deserves more. Any advice?!

clkSibs profile image
clkSibsExpert in reply to Hidden

Hi Sjjones1mecom. Thanks so much for posting. It sounds like you are providing a lot of support to your sister - for lots of adult siblings it is this level of vigilance that is so important in making sure their brother or sister are well and cared for. You have clearly identified some gaps in her support - being socially connected, having things to do and being part of a community are vital for health and wellbeing and are incredibly important for adults with a learning disability. It doesn't sound from what you are saying that she has had a Care Needs Assessment and it sounds like your last contact with social care was a bit off putting. However, if your sister needs care and support because of her learning disability, the local authority usually has a duty to carry out an assessment. However, it is useful to bear in mind that during the coronavirus outbreak, some of these duties have been downgraded. Do contact the adult social care department where your sister lives and outline your concerns and explain what you can and cannot do to support her needs. It might be helpful for you to write down all the support you provide for your sister currently, and what might happen if that were to be removed - the example you give about past financial problems is a useful one. Do emphasise the gaps you have identified in regard to your sister's isolation and her vulnerability with financial matters.

It might also be worth contacting some other local voluntary organisations for advice on leisure services they might offer to adults with a learning disability. I am sure Mencap will jump in here if there is help they can offer. Do also have a look at the guides on our website - you might find the "When your disabled brother or sister needs support: How to get a care needs assessment" guide particularly helpful. sibs.org.uk/support-for-adu...

Do get in touch with us directly at info@sibs.org.uk if we can be of further help.

Kind regards

Clare

Hidden profile image
Hidden in reply to clkSibs

Thanks so much for your advice, I appreciate it.

Sarah_Mencap profile image
Sarah_MencapAdministrator in reply to clkSibs

Hello Hidden

Great advice here from Clare. It would be worth seeing if there is a local Mencap group nearby - you can search on here mencap.org.uk/advice-and-su...

It is a shame the adult learning disability team near you isn't helping much. They may not be able to provide support directly to your sister, but I would have thought that they could have signposted to other organisations who could. It may be worth asking specifically about this.

I suspect there may be local groups who may run activities for people with a learning disability. Whereabout does your sister live?

Mencap's helpline may also be able to help you find local activities and support for your sister. You can call them on 0808 808 1111 or fill out this short form - mencap.org.uk/contact/conta...

The other thought would be to see if there are any befriending schemes nearby. This varies depending on where you live, but there are a lot of great schemes across the UK. I know your sister is 49, but it would be worth seeing if she could be part of Age Uk's befriending schemes - ageuk.org.uk/services/age-u...

Best wishes

Sarah

Sarah_Mencap profile image
Sarah_MencapAdministrator

Hello. There is an interesting post here too about siblings not being able to visit their loved ones during the coronavirus lockdown.

healthunlocked.com/mencap/p...

I wondered if this was affecting a lot of people at the moment.

Cheers

Sarah

Hello. I hope I am not too late to join in. I haven’t really thought about this much – which is really awful. I tend to think mainly about the caring I do. My son is older than his sister(who has a learning disability) and has already left home. They get on ok, but the age gap meant they didn’t do much together. I don’t think it has dawned on him that he may need to step in if I can’t. He has a young family of his own so I am not sure if it would be possible. Is it wrong to presume he’d take over? We have never discussed it. Any advice about how to talk to him about this without freaking him out.Thanks

clkSibs profile image
clkSibsExpert

Hello Grace2232 and a very warm welcome. Thank you for sharing so honestly, I am sure what you have written will resonate with many parents. When you are busy caring day to day, it is often difficult to think about what the future may bring and what help and care your daughter might need in the years to come. We hear from many adult siblings who want to discuss this with their parents, but don't know where to start. At Sibs we support adult siblings to find the role that they want to play in their brothers and sisters lives. For some this will mean they want to take on full caring responsibilities when the time comes, for others it will be overseeing the care provided by statutory services and there are others who may not be able to or wish to take on this level of care and support. Siblings can and should have a choice in the role that they play.

As this is something we get asked frequently, we have put together a guide called "Talking to your parent about common sibling issues." I think you will find some of the content and advice helpful too in starting to have some conversations with your son. sibs.org.uk/support-for-adu...

If your son has his own young family it may not be practical for him to be a caregiver to his sister. His partner may or may not wish to be involved. It sounds like it would be useful to start talking to your son about this - your son may have been looking for you to take the lead on discussing this. We advise that it is good to start talking as soon as you feel able to, it is so much better to have plans in place when there isn't a crisis such as carer illness. So often we speak to adult siblings after such a crisis has happened and it is so much more difficult to work things out in those circumstances when tensions are high.

In the first instance, it might just be helpful for him to know about Sibs and the work we do. Perhaps let him know that you found out about us and point him in the direction of our website sibs.org.uk Follow this up and ask him about what he read or how he feels about being a sibling. I would take a gentle drip feed approach especially as you are concerned about worrying him. We would be very happy to talk to your son if he would like to get in touch. Our email address is info@sibs.org.uk

You don't say what services if any your daughter currently receives, but it may well be worth thinking about looking at what other support might be out there too. This information will be particularly helpful for your son in making the decisions that are best him and his family, there might be a range of solutions that could work together.

I do hope that this is helpful, but do come back if you have further questions.

Best wishes,

Clare

clkSibs profile image
clkSibsExpert

Hello again. I just wanted to say a huge thank you to Sarah and to Mencap for having us as part of the community this week to talk about siblings. I have really enjoyed reading and replying to your posts and I know we have had some siblings get in touch with us directly as a result of this discussion - so enormous thanks for helping more siblings to find us! We are very much looking forward to celebrating #NationalSiblingsDay tomorrow, Friday 10th April and will be sharing more sibling stories and photos on our social media. I hope you will join us!

We have lots of information on our websites - sibs.org.uk has information for adult siblings, parents of young siblings and professionals. If you know a young sibling aged 7-17 do let them know about our youngSibs site - youngsibs.org.uk They can find lots of information, tips and a safe moderated chat forum to connect with other young people who share some of their experiences. As a sibling myself, I know how important it is for us as a community to connect and share our sibling stories. If you need our support, do get in touch by email at info@sibs.org.uk

I know these are difficult times for siblings, their disabled brothers and sisters and wider families. Please take care and stay safe.

We hope you will have us back next year!

Kind regards

Clare

Sibs - For brothers and sisters

Sarah_Mencap profile image
Sarah_MencapAdministrator

Many thanks to everyone who has joined in, or read, this conversation. Also a huge thank you to Clare (CEO of the Sibs charity - sibs.org.uk/ ) for such amazing posts and advice.

This topic is now closed.

Don't forget that tomorrow (10 April) is #NationalSiblingsDay - twitter.com/hashtag/nationa...

Please do keep an eye out on social media for more sibling stories and photos,

If you want to post about siblings (or anything else) please just write a new post - healthunlocked.com/mencap/w...

Bye for now.

Sarah

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